Tuesday, February 16, 2010

I stared at an adult with disabilities, and wondered if I was seeing Max's future



I am sitting in the Whole Foods food court. I sometimes come here to work during the afternoon, when it's impossible to get stuff done at home. Sabrina is constantly by my side, wanting to go on the computer and mess around. Small wonder—she sees me on it all the time. "The Apple [computer] doesn't fall far from the tree," Dave likes to say.

So, here I am in Whole Foods. A woman's cleaning the tables. She has Down syndrome.

I watch her from behind my computer screen. She's pretty, with short, swingy brown hair, and precise in her movements: tear off two paper towels, fold neatly in half, spritz the table with cleaner, wipe in small circles.

As she sprays and wipes the tables, she is murmuring to herself and smiling. I wonder what she is saying.

I return my eyes to my computer screen, only I do not really see it. Because my mind is racing and I am thinking only about whether this is the sort of job Max might have someday.

This was not my plan for my child. Not that I had a specific plan, but it vaguely included brilliance, a top-notch college and a high-powered job. It did not include cleaning tables, mopping floors, pushing the mail cart around an office or other jobs I have seen people with disabilities doing.

Quit thinking like that, I command myself. How absolutely awful and demeaning to impose your idea of "success" on her. This is her job. It is a respectable job at a nice place. She takes pride in what she's doing.

Oh my God, if you write about this you might tick off the people with disabilities who read your blog. They will think you are slamming them.

But I am not slamming them. This is about a parent's latent grief. This is about letting go.

Seven years after Max's birth, I still mourn the loss of the child I expected, even though I love and adore the child that he is. And I think that is something you can only understand if you are a parent of a child with disabilities, not an adult with disabilities. Seeing an adult who's handicapped is a shock to the system, the same way I feel when the toy catalogs for disabled kids arrive in the mail, or when I am at the play area in the mall surrounded by kids clambering all over things and there's Max, struggling to climb a step. Except that seeing an adult who's disabled is even more unnerving; it is my fear of the future staring me in the face.

I have accepted Max the Child with disabilities; I have not yet come to terms with Max the Adult with disabilities. I will grow into it, I know, in the same way I grew to understand and accept Max's challenges. But right now, it is too difficult for me to grasp. And too painful.

I know that other moms have similar feelings. A reader recently e-mailed me about a friend of hers with a disabled kid who got livid when her son's counselor suggested that he could be a bagger at a supermarket.

I look up again and see her smiling sweetly to herself.

And suddenly, in the middle of Whole Foods food court on a sunny winter afternoon, I am getting choked up.

Crap.

Stop it. Just stop it, I tell myself. You do not know how Max will turn out or what his abilities will be. Who knows what will happen. Whatever he is like, whatever his abilities, he will be OK.

And then, I am calm again.

And she is still cleaning: tear, fold, wipe.

And she is smiling again.

And she seems perfectly content.

68 comments:

  1. Ah, you did the post, Ellen.

    It's a powder keg of a subject...and people will be vocal about their feelings. But your honesty and transparency are the things that keep me returning to your blog.

    There are so many things to say about this post. What I think is most important, is that we change and grow along with our kids. We won't be thrust into anything. We will be given time to change our ideas, our "plans."

    That is the surprising thing of life. We sometimes become someone we never thought we'd be, with thoughts we never thought we'd have.

    I know I've changed so much, and keep on changing. And my child has made me a better person for it, and made my world bigger.

    What I see in the future with Max, is his ability to make you bloom like a rose. Something that never would've happened if it weren't for Max=superhero.

    Things are the other way around with Max: he's made you what you are today. You've struggled all the way, but that little boy never gave up, and won't give up and he'll pull you kicking and screaming if he has to, until you are made anew through Max.

    Just think of how many many good things lie ahead. Different from what our limited dreams were, so different, and bigger than we ever would have dreamed for ourselves. Our kids save us from ourselves.

    Love to you, Ellen.

    Alexandra

    P.S. The young lady in the picture looks so content: instant results from her labor, how gratifying. And that is OK.

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    Replies
    1. Beautiful reply. Thank you. As a grandmother of a little boy with special needs, I needed to read both this article and your reply, Alexandra. Such encouragement. I like how honestly Max's mother shared her heart. If we can't speak honestly about what we're feeling - if we have to tread softly about what other people might think about our feelings - we're in a sad state.

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  2. Barbara from BostonFebruary 16, 2010 at 1:15 AM

    Hold on, Ellen. Downs Syndrome and Cerebral Palsy are light years apart. Downs (often )includes mental retardation, heart defects and short stubby fingers. it appears that Max is probably at least normal intelligence, with motor difficulties of one hand, a little difficulty walking and speech deficits. He also just turned seven, so its impossible to guess how far he will come in the next 11 years or so. He also is the recipient of stem cells which do seem to be having a positive effect. Was that infusion a one shot deal or if it has a positive effect is there a possibility he can undergo another transfusion? that too may help Max make further gains.
    Max at age seven seems to accept his present movement and speech restrictions; positive interactions with family, friends Max and therapists as well as Sabrina and her friends make it more likely that he will retain that cheerful acceptance.
    Even if he does have major deficits as an adult he could likely live away from you and Dave, even if he lives in a group home. The young woman you saw probably counts herself as a success because she makes a salary, she has a job to go to however many days a week.
    Also, employment and vocational opportunities will increase over the next 11 years. Depending on school regulations and special needs laws in your state Max may be able to be educated until the age of 22. Those will also hopefully improve over the next 11 years. There will also be medical and prosthetic improvements over the years- this is in your sons favor.
    For now Max seems to be a happy cheerful person. Growing up in your family, he probably will continue to be. Attitude will make a difference in the way others perceive him.
    The familial attitude makes a difference too. He has a supportive loving family. This is also in his favor. love can accomplish miraculous things.
    Be stout hearted Ellen. Max's future has a lot of positives in it.
    By the way your word verification device is back. What
    happened to it in the recent past?

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  3. I am not a parent with a child with a disability, but I have worked with people with disabilities and have relatives who are disabled.

    I can imagine how scary it might be thinking of Max's future, but Max is a lucky boy even with a disability.

    He has parents who love him, who marvel at him, who are his advocates.No matter if Max bags groceries or if had he not had a disability and been a CEO would you love him less for one and not the other? Is one occupation really more important than another?

    Look at the young lady again when you shop there... see her attitude? She is happy and proud of her work. She passed you a smile- pass it back to her and youre both smiling :)

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  4. Hi Ellen -- like the previous poster, I'm not a parent, but a relative (niece) who used to work with adults with disabilities. I know I can't put myself exactly in your shoes, but I hope I can offer a ray of hope.

    My aunt, who is in her 50s, has Down Syndrome. After years of being incredibly sheltered by my grandmother, she recently moved into a group home. And (at 53!) she is suddenly doing so much more than anyone expected. Living independently, and most importantly so very happily. The whole family is surprised, and beyond delighted for her.

    Your son is young, and it sounds like you are helping him to manage his disability aggressively. There is no telling what he'll be able to do, except that he will surprise and delight you in how he redefines the boundaries of his abilities.

    The feelings of loss that you describe are very common -- I heard them from several family members of my clients. While validating the feelings, I would tell them the same thing I'll tell you: As you certainly know, people with disabilities have rich, full lives, doing most of the same things regularly-abled peopled do. The difference is that sometimes they need a different way to do it -- keep dreaming big for your son, and be open for him to find different paths to those goals. He'll make it!

    Best of luck to you!
    - Cat

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  5. I get what you are saying.

    There's an old B/W documentary called BEST BOY that was made by the cousin of a developmentally delayed middle-aged man who lived with his parents and had little to no "services" during his many decades of life. His cousin got him into a program and his life changed totally, at an advanced age, too. He went from doing nothing save the dishes at home to living independently during the course of the film. He achieved what was once regarded as impossible for him by his well-meaning, over-protective, coddling and somewhat-in-denial parents.

    It's a good film on so many levels, and I saw it again, not all that long ago, on YOUTUBE. It's helpful to watch the family dynamic in that film, along with the progress the BEST BOY makes. It helps sort out some of those emotions that quite naturally come to the fore (and they will yet again as you watch the movie), that really need to be confronted and wrestled down to the ground, lest you spend too many of your days getting choked up at the food court.

    Watching the film might help with that grieving process, too. Your dreams for your kids are like children, themselves. When they're lost, plainly impossible, "not-gonna-happen," it's totally natural to go through those stages of grief just like you do when a loved one dies. After you deal with all that, you then have to shift focus to what you CAN manage, what you CAN have some control over--and that's helping your children in achieving independence, progressing and growing continually and engaging in the all American activity of pursuit of happiness.

    I never had that top-notch college experience, or that high powered super-successful job, and I managed (and still do manage) to snag myself a fine piece of happiness out of life, notwithstanding more than a few pretty grim setbacks. We're in better shape than a lot of people in this world--I tell myself that anytime I'm over-inclined to go into pityparty mode. Sometimes it actually works. Other times, not so much (mind you, there's nothing wrong with a theraputic boo-hoo every so often, it clears out the pipes...).


    Max will find his way, I'm sure of it. He's got a loving and incredibly wonderful family who will back him up and help him move forward on his path. It might not be the path you initially dreamed for him, but it's his adventure, and his alone.

    Now you've got to find your path, the one that gets you to the place where you can deal with this very natural heartache and mitigate it to the point where you barely notice it--at least, most of the time.

    Easier said than done, certainly.

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  6. I like that you made the distinction about being the parent of a child with a disability -- that says a lot and helps to unravel this conflict. Your honesty is refreshing, and the more we all discuss these things the better. Being the parent of a child with a disability pushes us into these uncomfortable situations, forces us to parse out what we believe and what we wish and what we should know.

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  7. That was a pretty poignant post, Ellen.

    I don't really spend any time grieving for Connor or thinking about what might have been. Maybe it's because I know that our time with him is probably pretty limited so I don't want to waste any of it being sad over things I can't change. I figure I'll have plenty of time for that when he isn't here any more. I don't want ot look back on the time we had with him and realize I spent it all mourning what he might have been instead of enjoying the person he was.

    I never thought that I'd say I'd be thrilled if my child became a grocery store bagger, but I'd probably be pretty excited about it now because it would mean both that Connor would have acquired the motor and cognitive skills necessary to do that kind of work, and also that he was around long enough to be of an age to do it. Funny how your perspective can change like that.

    Of course, we found out that Connor would have some very severe medical issues long before he was born. We had five months to get through the grieving process and to educate and prepare ourselves before he emerged into the world. I think it would be a different story if we'd been expecting a healthy baby and then been thrown into a world we'd never thought we'd enter. I think your feelings are perfectly legitimate and if I'd been sideswipped by Connor's disabilities the way you were with Max's, I'd probably feel the same way too.

    Kudos to you for sharing your thoughts on such a difficult subject.

    ~Jess

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  8. Sadie is only 3 ..... but I've sat in that seat...and I'm sure I will on many more occassions.

    Ellen, thank you for sharing this!

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  9. You will be okay Ellen.

    Most of all, Max will be okay.


    ((((HUGS))))

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  10. I remember when I was pregnant with my daughter...the only question that people could seem to ask was "do you know what you're having?' Do people understand how dumb of a question that really is? Then they'd throw something into the conversation like 'well, as long as the baby is healthy right?' My reply to them was that I really didn't care about the gender and that I just wanted to have a 'good person'. Meaning, a person with a soul of gold. I didn't know the sex of my daughter until they flopped her on my belly and I didn't know of her CP until 7mo. later and I didn't know the cause until she was 2.

    I too worry about her future as an adult only because it's part of the unknown. I really just want her to be that good person I wished for when I was pregant and a happy one at that. I'm sure our kids will be...really, they already are.

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  11. It's ok to wonder and to be concerned. I wonder about my children and they are not considered 'special needs' children. Although my daughter has Turner's Syndrome and my son is either ADD or possibly has Asperger's, they are considered 'normal' children. I worry that they won't get the best education possible, that they will settle for a job, any job, as I have, and that they will be miserable as adults. It is normal for a parent to worry about their child's future no matter the circumstances. Just have faith that all will be well.

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  12. Thank you for voicing the concerns and fears that so many of us are afraid to face. I think you've perfectly hit it when you said you've come to terms with Max the Child, but not Max the Adult. There IS a vast difference, and we'll all adjust by the time we need to, but it still scares the crap out of us, looking the future in the face.

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  13. It's terribly hard to accept that my definition of success is not necessarily my son's. I know your pain exactly, because I feel it all the time. My son was supposed to do great things. I was supposed to smile modestly and brush off the praise, secretly knowing that it was, in fact, my incredible parenting that made him the man he became. And I suppose that's still true, just not at all the way I planned....

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  14. Thanks, all, for the reassuring comments. I know Max is going to be OK—and, most likely, BETTER than OK. And that he will lead a rich, full life. This is all part of my road to acceptance, and it is a road filled with bumps and detours and the occasional pothole.

    Felicia, I keep meaning to watch Best Boy, it was on the roundup list I did of movies about people with disabilities.

    Barbara, Max has some cognitive issues, but it's still hard to know exactly what's going on inside his head sometimes because of the lack of speech. Oh, and I put the word verification back because I started getting spam comments.

    And, Jess, I wanted to hug you after I read what you wrote. That is real perspective.

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  15. I have the same thoughts/fears/frustrations. There is a woman that is almost always at the movie theater that we usually go to. She is wheelchair bound and takes our tickets as we enter the the hallway of theaters. She is always friendly. Seeing her (and other handicapped people making a living) stir up mixed emotions in me. Sometimes I wonder if my Joe will be doing similar jobs someday. Sometimes I wonder if he'll even be able to do that much. Other times they bring a smile to my face knowing that instead of living in an institution somewhere these people are out in the world, working, living and functioning to the best of their abilities and that makes me happy and encouraged.
    God is good. His plan is not always the same as what mine is. But He is far more capable of making a superior plan than I am. As difficult as it is sometimes, I have to continue to trust Him and know that His plan for Joe (and me) is what is best.

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  16. We had a family get-together yesterday, and I kept thinking after of all the things my son will never do (my niece is in her first year of university, top of her class, winning awards, has a research job lined up for the summer, on scholarship, has a great boyfriend, etc. etc.)

    But then I keep coming back to the fact that I truly just want him to be happy. If he is happy, it doesn't matter how his "life" compares to anyone else's. I don't assume that his dreams are my dreams, and my dreams have changed so much since my son was born.

    It bothered me that one commenter compares kids with CP to kids with Down syndrome, implying that the former is so much better than the latter (light years apart).

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  17. I too can get absolutely lost thinking about what Anna's future will entail. But then I have to stop myself and remember that I could have never dreamed that life would be what is has been un to this point so how could I possibly imagine what it will be from this point forward. I do not htink grief is ever really over. I think it will always come and go and express itself in differnt ways. I think thinking about the future is just one more way grief expresses itself- grieving the normalcy that will never be. God bless you for your honesty. It is quite nice of people to express how it feels when there is someone "disabled" in their family but it is quite another thing to know how it feels as a parent. It is a feeling you cannot fathom until you are there.

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  18. This is Joyce. Wow, talk about a keg of dynamite - not your post - but the comments. To Barbara in Boston, yes my daughter with her mental retardation, corrected heart defect and short stubby fingers does clean tables at a nursing home. By the way, this particular nursing home is full of rich Jewish women, who have their jewels in boxes in a drawer, their fur coats in the closet and can't remember their own name from day to day. Many can't feed themselves, they need diapers, they drool and wear ankle bracelets that buzz when they get too close to the doors. They don't often have visitors because they no longer carry that aura of success for their families. But guess what? My daughter with Down syndrome doesn't care about any of that. She loves the people she is working with. She doesn't see all the negative stuff their families do, she just sees sweet little old ladies that love her and appreciate that she sets their tables for lunch, cleans them when they are done eating, washes their menus when they get sticky and makes sure they have butter for their bread. She wipes their drool from their chin and talks to them. It doesn't matter to my daughter that they are talking about what happened in 1930, over and over and over again. My daughter is proud of her work. She wants to go even when she is sick and should stay home. When I once gave her the opportunity to play hooky for a day, she refused. Because she needed to go to work. I'll take that kind of employee any day.

    Keep doing what your doing Ellen. As life goes on, you will appreciate what he is doing each step of the way. There is no prediction for the future for any of us, but with your encouragement he will be happy and content, and isn't that what you really want for both of your children.

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  19. You are so right, Ellen - only we, the parents of children with a disability, can understand the mourning that never completely stops.
    I feel the same way when I see an adult with a disability. For me, it serves as a reminder that I won't be able to "fix" Monkey Boy and this is something he will have to live with forever.
    Then I read stories like one I posted awhile back about Kevin Mintz, a man with severe CP who has never walked in his life, whose parents were once given very gloomy predictions about his future... and who went to Harvard on a full scholarship.
    http://www.momsmiami.com/?a=profile&u=2&t=blog&blog_id=448
    The truth is that nobody knows what will become of our children. They and they alone can determine what they will accomplish.
    Will our kids be Wall Street hot shots, or will they bag groceries at Whole Foods? Just as with children who don't have a disability, only time will tell. In the meantime, as someone above me said, anyone who sees Max for ten seconds can tell that he is one bright and amazing kiddo.

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  20. Oh my g-d, Ellen. You are so awesome. I have all those feelings. A lot. I'm finally okay with Little Bird's disabilities as a FIVE year old, but as an adult?? NOT THERE YET. Of course, I go there WAY too much in my mind.

    There's a young man who bags groceries at my local market. I go out of my way to check out in his line. He's so happy, so friendly, and so clearly disabled. He jokes with Little Bird and they even have a game where she pulls her snow hat over her eyes and he pretends he can't see her. He warms my heart. He gives me hope. He makes me think that it just might be okay.

    And, yes, these tasks that seem menial ARE their jobs. Important jobs. I can't bag my groceries alone with Little Bird. We need those tables cleaned off so that we might eat off them. We need those grocery carts returned to the store so we can fill them up with our groceries (gluten free, casein free, soy free groceries!!).

    About a year ago, I sat with a lady in her 80s and told her about my bird. She listened and said, "the world is so, so big. She'll find her place."

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  21. To BLOOM:

    I agree with you. The quote that came to my mind was Mother Teresa, "We cannot compare our sufferings."

    So true, b/c suffering is suffering: and there are different degrees of it, and different tolerances of it, different pain, different fortitude, different resources.

    We are all different, and process things differently. We cannot put what we feel on another, nor can we say, "you have it better than me." Because we don't know the internal battles of another.

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  22. Ellen I think you are spot on with this post. I don't think we will ever stop grieving, it will just change to grief over different things. I am acceptant of where my Peanut is today, verses where other kids her age are. I am okay with the babyhood that we missed out on because of focusing on medical dilemmas. The future? It's hard to imagine. Who knows where our kids will be. Cognitively, mentally, anywhere.

    I only hope that as an adult, my Peanut has the abilities to work a job such as the woman you saw. It means she has overcome SO much that most people don't even think twice about.

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  23. Ellen,

    From when I first realized I had kids with special needs, my feeling was "I need to see the future". (Although I didn't put that thought into a phrase for quite some time).

    With my Asperger's son and my other ADHD son, I can see the future. They have issues now that make them (slightly) different, but I have no doubt that they will be successful in their own way down the road.

    With my nonverbal 5 year old, I can't see the future. I have no way of knowing what he'll be capable of when he's older. I can't see the future, and it really bothers me.

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  24. I love your blog. I love your honesty.

    It is hard to let go of our hopes and expectations for our children whether it is a disability, learning difference or just the lack of talent necessary for what they want to achieve.

    My younger son has APD and it is hard for me to accept. He is 7 and is just starting to catch up with his peers. My older son is on the other end. Very smart and studious but anxiety ridden and socially awkward.

    I am still mourning the sons I wanted (expected!) and learning to accept and love them as they are. Yes, they have issues but so do we all.

    Who knows the jobs that will be available by the time he is an adult! All we can hope is our children grow up to be happy and accepted. Better to get joy and satisfaction of a simple job well done than making money at a job you hate or are not proud of.

    Sometimes I think I am the one with the problem and not them.

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  25. I feel you. I find myself staring at older kids and adults with disabilities. I have to make myself stop b/c I don't want their parents/caregivers to think I'm staring b/c they have a disability. I just want to go up to them and give them a hug and say "you made it! Will I? What's it like?" I agree...the adult unkown is very scary. I almost decked my MIL when she said Olivia could shred paper or work at Target. But...I guess if that would make her happy. Anyway, poignant and brave post!!

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  26. Well said, Ellen. More helpful than not - with the kind of emotion your post evokes not being the measure of helpfulness.

    Each time you consciously changed your thoughts you showed how to get past the fear (of the future).

    Barbara

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  27. You have perfectly articulated my feelings -- feelings that I often deny even to myself, but that resonated so strongly as I read your post, I sat here nodding at my screen. Thank you, thank you, thank you. I know that your courage to say what I sometimes can't even admit to myself that I'm thinking is going to help me get through some of those inevitable tough moments. The next time a similar situation and the attending wave of emotion hits me, instead of frantically trying to avoid it or distract myself, I'll be better equipped to ride it out and deal with it, knowing I'm not alone.

    It will all be okay. And you have made it better for me. Thank you, Ellen.

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  28. Yesterday while watching Gabe get his second serial cast in a week, I started wondering about driving...yes it's 10 years away...but driving-with a right foot that doesn't have the "right" sensation, is that even possible? So I opened my big mouth and asked and didn't really like the answer. I wish I wouldn't have even thought about it because it brought me face to face with the reality that Gabe the disabled child will some day soon be Gabe the disabled teenager and then Gabe the disabled adult and so on and so forth. Just when you think you've dealt with the loss created by a child with a disability, something comes along and smacks you in the face, doesn't it? Great post Ellen, I really enjoy your blog.

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  29. Hi Ellen--This post has nothing to do with what you wrote (although I must tell you it was insightful and thank you very much for being so truthful!) I wanted to show you this link that I just saw

    http://www.huffingtonpost.com/2010/02/12/duck-teaches-disabled-boy_n_459897.html

    about a little boy who had a stroke at birth and a duck taught him to walk!

    (I'm the usually silent person who always reads your blog--I told you about my summer camp for kids with disabilities last year though!)

    -Stephanie

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  30. Awwwww... you had nothing to be nervous about.

    Again, I hit the disability jackpot with the Deafness. I see Deaf adults ALL THE TIME and am comforted by the knowledge that he will belong to a WORLD.

    What makes my heart ache a bit is knowing that as Graham grows up, he will likely leave me behind in the Hearing world, and I may not have access to his Deaf World as much as I do now.

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  31. Hi Ellen,
    Just found your blog.... Thank You for writing

    My son, John, has been a trial and an inspiration. His birth was baptism by fire for us. No one in our family had traveled this road, we were alone, afraid and searching frantically for a map.

    John is now in hospice and as I look back over the last 19 years there is so much to contemplate. It seemed at times the parking lot we were crossing was a shifting mountain with all vertical inclines and rough terrain which without warning would become the proverbial slippery slope. I have learned so much, grown in ways I could not have imagined and made friendships that will last forever.

    As I look back I wonder what could have made this journey less challenging. I think if anything it would be information. Simple hints that took years to discover would have saved hours of frustration, stories of inspiration given hope and the knowledge that someone out there had survived to tell the tale encouragement. Last but not least humor, for laughter truly is the best medicine.

    Thanks so much for sharing your honesty...... no part of this process is easy, however the rewards will last a lifetime, yours and your precious Max......
    Carry on! head high, shoulders back, you are doing something wonderful :)

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  32. I don't have anything to add that the previous people didn't already say. Just wanted you to know that I appreciate this post. Thanks for never backing away from the tough subjects.

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  33. I think you wrote my moment. Maybe the details are different but the landmine it left in me feels so similar to what you wrote.

    My son has brain atrophy that we are just now coming to fully understand the extent of. He already had another considerable disability which was enough for me, thank you very much.

    So instead of Whole Foods, I see a commercial for the Special Olympics. Granted, spawn of my clan are never going to be athletic champions to begin with. But I never imagined Henry there. I never imagined, as an academic researcher, that not every one of my 5 children were college material. Sometimes, the smarter parts of my brain just don't seem to get it, as if I am the one with the cognitive delay.

    Thank you,

    Erin @ HenrytheBlog.com

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  34. I do the same thing when I see an adult with a cognitive disability. I imagine that is going to be my son, Thomas. I have trouble seeing the future or even imagining the future in regards to Thomas, but when I see an adult like you described, it gives me a glimpse of what it might be like. and of course, like you said, I cannot possibly know what will happen with him, he may begin to talk, he may start to grasp things cognitively, hell, he may even be potty trained!! But it gives me a strange peace sometimes when I encounter families with adult children with a cognitive disability or just the adult, it makes me think, hey - they made it work. It may be tough like it is sometimes now, but everyone grows up and figures out a way to live in this world.
    I also always say that this is not what I imagined my life would be, but then again, i would never have my little boy, i might never have made the changes i have in my life to make myself happier and a better person (I credit my Thomas with getting me kick started with that).
    What an incredible post this was - thank you Ellen - I like the way your mind thinks.
    Kristen

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  35. http://www.hopscotchproducts.com/articles.html


    Awesome reading...though very frank. Dr. Moses speaks of the "death of the dream" and creating the new reality.

    Very thorough in describing the feelings, as a parent.

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  36. Barbara from BostonFebruary 16, 2010 at 3:38 PM

    I apologize if I offended anyone or if my post was thought to belittle anyone or any disability. That was not what I was trying to say. I was trying to comfort someone in pain.
    I come to this discussion as a former human services worker who was injured once too many times on the job. I have multiple disabilities. I was attempting to help. I am truly sorry if there was a failure (on my part) to communicate.

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  37. I knew this post would be fine. . .

    For me, I long ago gave up on the idea that college=success and happiness. It was something I came to long before Charlie working with kids who struggled to decode text on a daily basis. They were car wizzes, make-up mavens, fabulous friends, and brilliant actors, but reading? nun-uh. So, the dyslexics opened my eyes to a life that is just fine without higher learnning. I think that when it's drilled into us as children and then we surround ourselves with over-achieving adults, well, it makes it hard. It's a paradigm shift.

    Like you, I've accepted this version of Charlie, but probably not adult Charlie. But it's OK. . . I love him and I feel certain that that loving will carry me when the situation at hand is tough.

    Thanks for talking about the tough stuff.

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  38. This is what makes you such a great writer. You write what is on everyone's minds.

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  39. and when you see Max as the master of his universe instead of mastered by it- YOU will be ok.

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  40. Good post Ellen.
    Have you ever taken the step as a family to sit down and truly map out a shared vision. Once you have a vision for and with Max things start to fall into place so much easier. It stops the future being scary.

    You know what fits with the vision and what doesn't. eg we don't do any segregated services as it doesn't fit with our vision for Mac of an ordinary and valued life as part of his community.

    Each year we have a family dinner dedicated to goal setting for the next year in line with our vision. Now Mac has some communication options he will be a major contributor in this process.

    If you (or any family member of a child with a disability) has the opportunity to do courses in Social Role Valorization theory http://www.socialrolevalorization.com/reflect/reflect.html I absolutely recommend it.

    We did it late last year (haven't done the 'passing' portion yet) but it helps you clarify your vision that anything is possible and helps you identify what 'social models' could take you on a path you don't want to be on.

    The community has so much to offer in real jobs, valued roles. And there are plenty of people without disabilities doing jobs sometimes considered menial by others, but they do it because they love it. A grocery bagger might bag because they are quick at it, can do it while chatting, it's not a desk job, it has flexible hours and they like knowing each customer it taken care of by them and can get to the car without their bags splitting or their bread squished.
    Joyce's daughter does her job because she loves it and those ladies NEED her. Her daughter has been given a chance to grow into a 'helper' not the helpless.

    Who knows, if Max still has his purple obsession he might own a lavender farm, or a purple slushie mobile, he might work at a newly opened 'Purple Pit' where everything for sale is purple or with one of the sports teams who where purple uniforms.

    I love thinking about the future for Mac, it is exciting, sure I channel Pollyanna at times, but I truly believe with technology available and my ability to think outside the square... anything is possible.

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  41. This post is so true, and certainly something we moms of 'disabled' kids often think about. I completely agree with this thought of yours:

    "I still mourn the loss of the child I expected, even though I love and adore the child that he is"

    You hit home with that. I'm constantly torn with those feelings, and hate that I have them, but it's the truth. My son is just shy of 2 years old, and although I've stopped comparing him to typical 2 year olds...it's impossible to not think about it. There are many ideals we as strong women have for our children, and even tried to plan for them before they were born. I'm starting to realize that everybody in this world has problems to deal with, not just our kids with disabilities. ALL of us, have to cope and deal with personal struggles to make our own way. Some of us, like our kids, seem to have more obstacles to combat, but they will do it...in their own individual ways.

    I'll be happy with whatever my little man wants to do...and if he is smiling while he does it...all the better!!!

    I can't state enough how much I appreciate your blog. You put into words many thoughts we have, but wouldn't address without seeing it written!!!!!!!!!!!!

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  42. To Barbara from Boston, this is Joyce. I just finished reading this post again and see you have left an additional comment. This is the only way I know to get in touch with you, so I'm not sure if you will see this or not but I wanted to say that I appreciate your apology and do understand that you were trying to help. Thank you for taking the time to see other side of the story too. Please do not let this deter you from reading or commenting.

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  43. Ellen, I believe all parents of disabled children have the same scary feelings of the future. However, you guys are killing me...I keep telling myself the grief & mourning will go away some day. My son's almost 5 & I can't help but think that someday, just maybe, I won't cry about it anymore. I'm not sure that I really believe that, though, especially after seeing all the different aged children discussed here, with the same grieving continued. I must say that I 100% definitely agree with Alexandra..who would've thought we could've handled all of this?? But we have because these kids pretty much made us! They will continue on their paths & pull us along "kicking & screaming" as Alexandra put it! lol We grow with them. It may not be easy, but we'll do it at full force with our heads up high because that's what our babies need & expect from us. I'm noticing that all of us mom's have the same exact feelings & thoughts. I so wish I had all of you here with me. I could definitely use some friends..especially those in the same boat who actually "get it". At least there's the internet. Thank you so much, Ellen.

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  44. Hay Ellen

    first I am not at all mad at you

    seconed from what i have read it seems to me that Max has a stuborn fisty spirt about him. I see him as doing fine when he gets older, He may even go to collage. Programs for people with Intellectual disabilities are starting up all over the area. I think when Max grows up he will express interest in jobs and u know what he will have a job that he wants which will make him happy.

    three I will be posting about this supper soon

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  45. I have a lot more to say but i need to do homework

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  46. I keep coming back here so you guys can keep teaching me stuff. I don't really think so much about Hannah as an adult because I am so busy trying to focus on Hannah right now, but if I do have such thoughts, I still tell myself she is going to college, without considering whether she wants to. Humph. Something to think about.

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  47. Dear Ellen
    There is a new CP website www.CerebralPalsySocial.org and I suspect you will probably want to know about it. It’s for people who cope with cerebral palsy directly or indirectly, on a daily basis.

    So what can I say about it. It pays to have a look because you’ll see we’ve taken our first steps and now want to increase membership to make it more useful for all who use it.

    You are invited to open a blog, use the bookmark function, start polling, open a group or join an existing group, connect your Twitter or FriendFeed to your profile, and the options are growing all the time. Most of all, you can stay in touch with your friends and make new ones!

    So, stay well and stay in touch.

    The CerebralPalsySocial.org team

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  48. I'm coming out of lurk mode to say that I have had these exact same thoughts/feelings. I'm guessing from the number of comments that we are not alone. My daughter has DS and for the last two years I have had her portraits done by an awesome photographer who also happens to have Cerebral Palsy. She may do things the same as other photographers, but she does a fab job nonetheless. You can email me at livinforthelove @ gmail.com if you'd like her website address.

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  49. "Water and let grow."

    I read that somewhere, said by a neuropsychologist, evaluating a child...Loved it.

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  50. Somehow I missed this post and so am a little late adding my tuppence.

    The question that goes through my mind these days when I see an adult with a disability in a job which - in our society - is not considered as a "good job" is:

    Do they have this job because it's something they want to do or because it was the only job available/offered to the person.

    Last year I went to a supported employment seminar, the question one speaker asked was "what is the most important consideration in finding a job" - that it is something the person wants to do.

    In todays job market that is tricky for any of us! I big hindrance to finding work for people with disabilities is discrimination, an unwillingness to let people try jobs other than cleaning tables or packing groceries, not that I have a problem with either of these jobs, it is the question of choices available that is bugging me.

    We often say that we just want our kids to be happy, but being happy also involves being challenged and feeling satisfied with what we do.

    I know this is kind of off track with the original post, my mind wanders :-)

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  51. Emma, I love that question on your mind. It tracks off what Gina was saying and Barbara, too, about the types of opportunities that will be available to people with disabilities as our kids get older. I think that's something to be hopeful about as surely there WILL be more possibilities—and surely WE will make them happen.

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  52. There are a couple of individuals with Ds that I see at the mall food court - cleaning, and I've seen a female bagger at the grocery store, and a female stocking shelves at CVS. When I'm in the mall food court w/Kayla I, too, often wonder - will that be 'it' for her? Will there be more? Same at the grocery store. I smiled at the bagger and tried to picture Kayla in that roll. Of course I'd like to hope that there will be 'more' for Kayla and we will help her achieve her potential...I've also had this other side of me become 'ok' with the possibility that there just might not be more.

    Awhile back I did a post where I mentioned this topic of being 'just' a bagger and reconciled it like this - being a bagger, or cleaning tables in the food court even, is an honest job. It's making an honest living. It's providing a service for others and there is nothing 'wrong' with that.

    Do I look at other baggers, or food court workers in a different light? How come I don't give another thought to the other 10 baggers in the store? they are providing the same service as the one lady who happens to have Ds.

    So while I would like Kayla to aspire to be 'more' I'm also ok if she is bagging groceries or wiping tables.

    Great topic!

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  53. I have a friend who has severe Cerebral Palsy. She can't fully take care of herself. Her speech is largely unintelligible. She went to a self-contained school her entire life. Despite this she attended college-(one class at a time) - graduated recently with an A.S., has competed in Miss Wheelchair contests in her state, holds a job and owns her own condo. She gets support for bathing, shopping, etc because she is physically unable to do them alone. She, like Max, never fails to keep challenging herself.

    Max has a great future-full of possibilities because you keep raising the bar and expecting him to succeed.

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  54. I'm only now catching up on blogs and I just want to say I absolutely understand. I have those thoughts all the time when I see a person with disabilities. The other day I saw a woman in a wheelchair being pushed by another woman. They were both a little dirty and their clothes looked old. The woman pushing the chair talked very quickly while the woman in the chair just stared off into space. I thought, "Oh dear God, don't let that be my daughter in 10 years."

    The future is scary, but our children are wonderful.

    Sending you some big Mommy hugs.

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  55. to Joyce:

    May I ask what the use of the word 'Jewish'adds to your post? Is it important that the residents of the nursing home in which your daughter works are 'rich JEWISH women'? It really doesnt' even matter that they are rich, despite the fact that you seem deeply interested in the jewels and furs. Elderly folks in nursing homes are often alone for many reasons, whether rich or poor and certainly of any faith.

    Shame on you. Even as you indict Barbara for being 'insensitive, you come across as a bigot yourself. The shoe is truly on the other foot. Too bad this had to sully the thoughtful --and respectful--responses to this poignant piece.

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  56. Hey Ellen,

    I'm a 21 year old Sri Lankan with CP. I came across your blog by chance and have been following it ever since. In countries like Sri Lanka most people with disabilities are confined to their homes, get little or no education and have a bleak future. But the situation is changing. Even in my country disabled people are coming out of their shells.

    I, for example am studying at the University of Colombo. I'm in my 2nd year. I studied at one of the best schools in the country. My parents never gave up on me, even when I wanted to give up they continued to push me. They still do. They never lost their faith in me even when I thought I was useless. My future is not certain. I mean who knows where I might end up or what kind of job I will get? But atleast I know I will be doing something with my life. I will not be lost. People with CP are NORMAL. Parents whose kids do not have disabilities too worry about thier future. It's only natural. Parents worry about their kids all the time, disabled or not. I know that my parents are worried about me, what kind of job I will get, what kind of a husband will I have? Would even get married? I know they are terrified. So am I. Sometimes all I see of my future is just a gaping black hole full of bleak despair. But I can't predict my future anymore than a normal person can.

    People who do not suffer from disabilities are not certain about their future. No one knows where they will end up. We all fear what we can't see. It's all part of the future and all you can do is keep working to achieve your son's goals. Just like any other parent whose kid does not have disabilities.

    Be strong. Cheers

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  57. This is Joyce, to Butterfly. Unfortunately beacuse you give no link back, I can't respond to you directly. I am so glad you picked up on my references as they were purposely written. The point being, don't stereotype, about anything or anyone. Obviously none of the families of the residents my daughter takes care of ever thought they would be in the situation they are in. None of us can predict the future for anyone, including our children with disabilities.

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  58. I couldn't read through all the comments, but wanted to say that I have had twinges of the same thought... will my son be like that when he is an adult. My son is only 14 months old with "moderate" CP.

    We have a great therapy team and we've already seen big improvements, but I don't know what the future will bring. Will his progress continue or start to slow as he gets older? Will he be affected beyond the physical limitations? Communication? Learning or emotional disabilites.

    I think these feelings come up when I see adults with disabilities because it is a way of coping - of opening myself up to all the possible outcomes. I also try to find comfort in reminding myself that the unknown should not scare me anymore than any other parent. Every parent looks at their child and wonders what the future will bring-joys and challenges.

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  59. as i am dealing with something similar, this issue seems to be cropping up everywhere i look. a sign, perhaps?

    i don't think we, as parents, really realize how we load expectations onto the tiny shoulders of our kids, from the get-go. this plays out in various forms as they get older. many parents live vicariously through their kids and don't realize it. in a way, those of us whose kids face REAL challenges are given a gift, even though it doesn't feel like it. or at least, that's what i tell myself. my peers are all crazy about what college their kids will go to, and if their kids are popular, while i am thankful my child MAY actually live to graduate from high school.

    and i know i sound so cavalier about this, but i have had 16 years of working on accepting the fact that my child's journey is HIS and i need to just love him. but as i tell you all of this, i tell it to myself, too. the past few years have been good, but as he gets closer to being an adult, there are many days that are truly dark for me.

    anyway, i am rambling... my mind is a mess. but your post spoke to me, this early friday morning, and i wanted to say thank you.

    you hit on something important, pointing out that there is the disabled person's journey and then, there is the parent's journey. they are inextricably entwined, but very, very different.

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  60. Read your confession about the girl with Down Syndrome who you observed working. I am the mother of a 16 year old girl with DS. When I read your words, I wondered how you had heard my own very similar thoughts. After parenting Chloe for so long I have gained perspective that you, too will get in a few years. Don't let yourself get too far ahead in your hopes and worries about your son's life. Let yourself go about one year out for planning purposes. You wouldn't know what was going to happen if he were a regular kid, so why add that burden to your already bigger job as his mom? You spoke of mourning the loss of the child you fantisized about having. I did, too. I wouldn't trade Chloe for anyone else, but I have learned to slow down and adjust my hopes for her. She has taught me to keep it real and I am a better mom for it.

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  61. My son is 6 and cognitively 9-15 months. He is very sweet and social -- but nonverbal and he does not seem to understand very much at all. We absolutely adore him. He is transitioning to Kindergarten next year and his current teacher told us that his classroom will focus on things like understanding money vs. algebra -- but that he would still have a math curriculum, etc. even though he will not be mainstreamed. My husband and I looked at each other -- it was hard to hear that this will be the limit of what my son will probably learn -- and harder still to understand that understanding money may be beyond his ability. One day at a time seems the only way to make everything work. Honestly, if I thought that my son would ever have the cognitive ability to be a bagger at Whole Foods I would be overjoyed.

    I too find myself "staring" at children and adults with disabilities and have to stop myself -- it is because I just want to run up to them and say, "I understand" -- it is like meeting a long lost relative -- only I realize at the last minute that not everyone may see the world as I do.

    Thank you for your wonderful blog.

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  62. I think you are spot on that your feelings one can only understand as the parent of a child with disabilties rather than as the person with disabilities themselves. There is a recently published autobiograhpy by a man born without legs who goes around the world photograhing himself. He is happy with his life and who he is. But he talks about how hard he would find it to have a child with the same disabilities!

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  63. I'm very late adding to this thread, but I often have the same response as you do, Ellen. I *know* that I'll grow into Hallie's disabilities, but I am not sure that I'll ever give up the grief that I feel over them. With autism, it always seems so murky. We're not sure where she is cognitively, and we're not sure whether what we are doing will help her cognitive skills or her capacity to engage with others. We just keep doing what we're doing because, like you say, if it doesn't hurt her and it might help her, we're there.

    But it's hard: our expectations for our children are, by definition, so high because we have to have hope, but as the days and weeks and months pass, we also can't afford to hold out as much hope as we once might have because hope, when dashed, really hurts.

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  64. Hi, Ellen!

    (By the way, I'm the deb that's been sharing email with you about the article. My son is Jake.)

    Since emailing with you, I've been reading randomly through your blog and was drawn to this post. Why? Well, I had my own experience that also brought all of the uncertainty and loss to the surface, and I just had to read how another parent felt. Thanks for sharing.

    Here's my post about a similar experience: http://movingtoazonedefense.blogspot.com/2009/10/doppelganger.html

    deb

    PS Just had to say that I love that your name is Ellen. One of my closest friends is also an Ellen and had a son with special needs. :)

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  65. I can absolutely identify with this post. My husband and I have had such similar experiences.

    But what I wanted to take a minute and point out is that there are times WE (my husband and/or myself) stare – for any number of reasons – and another kid/parent/family with a disability misinterprets our staring.

    Given, good manners would say that you're not really ever supposed to stare but my point is that as the parent of a kid with Down Syndrome, I have learned NOT to always think the worst. If someone is staring they might be connected to our "special" group in some way.

    Maybe they are the grandparent of a newly born child with a disability or they have a sister with CP or they teach SpecEd...

    I guess I've found that I'm less affected by people staring at us b/c you just can't know what the thoughts are that are accompanying those looks you're getting.

    S

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  66. I'm sorry that I came late to the party.

    I thought I was the only one that felt like this - and I've felt so guilty for it!

    When Mango was first born, there was the hemorrhage and surgeries, and I told myself, "well, there goes pro-football - now we'll have to join the swim team and be a great Olympian!". Later when we got the CP diagnosis, I adjusted again, and said "ok, to hell with swimming - we'll be a top-shelf attorney!". After that we were told about the 'incredible insult' his brain had suffered. Funny - they used to call that 'brain damage' - but now it's just an 'insult'.

    He's my only child. I was always told I'd never have children of my own. When I got pregnant, I thought it was a miracle. I had such dreams! He still is a miracle. He's so beautiful. So happy. So loving. He's almost two now. I can't yet handle seeing an adult with this type of disabilty - what they can and can't do - their level of function. It hurts and it scares. I'm not there yet.

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  67. For some reason, when i read this post i teared up. I'm not sure if they were tears of joy, sympathy, or mourning and wondering over my own future. As ive commented elsewhere on your blog, im a 28 year old male living with an ASD.. I have a college degree. I work as a substitute teacher. The disability makes things difficult some days with organization and managing the kids and all the discipline, but in some circumstances, i excel. I wonder about my future too. If I, a college graduate with a disability who has already overcome huge obstacles in independence (not the least of which is getting my drivers license and studying abroad in China) have worries about my future and don't know what kind of life i can lead and sustain with my disability, then you can rest easy. Encourage Max to keep striving toward independence, and he will get there. You have to push hard, and NOT be afraid to to take risks in trying things. Don't be afraid to dream big. If I didn't push myself, i never would have gotten my drivers license. I practiced and practiced driving, and this was years after i had given up the idea of driving after flunking out of drivers ed in high school. If i didnt take risks, i wouldn't have been daring to spend 4 weeks studying abroad at Shanghai University and 1 week touring Beijing afterward. But i did, and it is one of the highlights of my life. If i didnt push hard, i wouldnt have completed my bachelors degree and a 124-page year long thesis. I did, and was extremely proud to walk across the stage wearing honor chords (not university honors, but membership in a sociology honor society).

    However, keep a balance between pushing hard and dreaming big, and having too high expectations. The trick is knowing when you're really not being realistic. Ive strlugged with that too. I used to want to be a priest that travels across the US giving sermons..that is not realistic. But, that doesnt mean i can't get married and raise a family, it just means those things are few years off yet. forgive the uneven flow of ideas on that last sentence.

    Dream Big, encourage him to try hard, and love him and accept him where he is, isteand of worrying about where he will be. I have dreams of getting a Master's in Occupational Therapy. I looked athe course descriptions for it and im like WOAH WOAH WOAH.. im taking baby steps toward the goal.. remember, baby steps.

    Peace out!

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Thanks for sharing!



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